Senators Unveil Plan To Boost Down Syndrome Research

Efforts to expand Down syndrome research may be gaining traction after a pair of U.S. senators introduced legislation to increase funding and establish centers to study the disorder.

Two bills introduced in the Senate Thursday would allocate $6 million annually to create six centers of excellence for Down syndrome research. In addition, the measures call for the establishment of three research databases and would require the National Institutes of Health to maintain a Down syndrome research plan.

Traditionally Down syndrome has benefited from fewer federal research dollars as compared to other conditions. Last year alone, more than three times as much was spent on cystic fibrosis research even though that condition affects just 30,000 Americans compared to 400,000 with Down syndrome.

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Supporters of the proposed legislation — which is similar to a plan offered up in the House of Representatives in July — say that the bills would go a long way toward putting Down syndrome on more equal footing in the research world.

“Virtually all of us know someone — a friend, a family member or a colleague — that has been touched by Down syndrome. Yet despite its prevalence, research on Down syndrome has failed to keep pace with the research for other common genetic conditions, like autism and epilepsy,” said Sen. Sherrod Brown, D-Ohio, who introduced the bills along with Sen. Susan Collins, R-Maine. “These two bills will help expand and coordinate federal support for Down syndrome research.”

It’s unclear when the legislation might be considered but there are some signs pointing to increased interest in Down syndrome research at the federal level. In addition to the efforts in Congress, earlier this fall the NIH formed a first-ever consortium of families, researchers and advocates to help guide the agency’s priorities on the condition.

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